I’ve been holding my weight. Two weeks ago, my partner and I returned from a 2 week vacation, in China. It was a healing experience. Also exhausting. The photo, below, was one of many historic places and temples that we visited. Those places gave me perspective, and a great sense of peace.

Fortunately, it’s possible to sleep while flying from one place to another. I also slept about 12 hours at a time. That left the other 12 hours to see, hear, smell, taste, feel, experience. We returned a few days early, so that I could rest before starting back to work.

The appointment system at the oncologist office is dysfunctional. Every appointment has had issues with scheduling. This time, they notified me of my appointment, without working with me on the date and time. This was after stating, the next appointment would be in 3 months. This was one month later I wondered, why so soon. The response was, “Your oncologist wants to see you”. Then a day before, his nurse practitioner called, and told me she would be seeing me instead of him, due to schedule conflict.

I kept the appointment. The NP was more thorough, and listened better, than the oncologist. I was glad for that. We discussed my concerns about worsening renal (kidney) function. I was worried because mine decreased. From the list of side effects, that does not appear to be an issue with Gleevec, but it is an issue with CT scans. Catch-22. Scan is needed to evaluate for recurrent disease, but can worsen kidney function. She pointed out, I had missed the recent lab result. That showed some improvement in kidney function. So that was good. We also discussed my blurry vision.

I know, as a doctor that the demands on doctors, vs. allied practitioners, are different. NPs and PAs can be awesome, and have an essential role in health care. Anyway, I’m grateful for the NP and her kindness, compassion, and honesty. She did a great job, and was very nice, and completely professional.

She also noted, they have minimal experience with Gleevec for GIST. Very little experience. I was wondering if my oncologist had any experience with Gleevec for GIST. I understand, as a doctor, that we often have to forge ahead in uncertainty, and often have to start somewhere. But I am honest when that happens. That honesty builds a trusting relationship. It also tells me what I need to do to advocate for myself.

It’s strange, being a physician, and dealing with the dysfunction of the health plan as a patient. I know the challenges. I know what I have to do in my own practice. I like to think I’m more open, more “user friendly”, more compassionate. The system overwhelms all providers, doctors, nurses, medical assistants. But what I think we all deserve, without exception, are compassion, respect, and whatever dignity is possible.

The issues now with Gleevec. Or is it just aging? Or something else?

Fatigue. Not better. Learning to deal with it. At least fatigue isn’t painful. It’s not as bad as nausea, or diarrhea, or rashes, or other things that could happen. I have times with energy. Those are usually am. Afternoons I usually feel pretty wasted. Not sue how to deal with that. Trying not to make an issue out of it at work, just forge ahead and collapse at home.

Diarrhea. Episodic. Last night at the grocery store I had to put down my groceries and run to the restroom for a diarrhea emergency. Fortunately I got there in time. There was a small miss, but not enough for anyone to notice. Being honest here.

Blurry vision. I went to optometrist. She was baffled at the sudden worsening vision. Said it shouldn’t be the Gleevec. Their equipment confirmed the worsened vision. I got the feeling she didn’t know much beyond being able to prescribe corrective lenses. They are better than nothing. Retina scan was normal. Ophthalmologist appointment planned.

Muscle Cramps. These were unexpected. Wow! They are dramatic. Often I feel an incipient cramp and head it off by concentrating on relaxing the particular muscle. Feet, calves, wrists, hands, thighs. Nothing facial yet. It’s weird. So painful, but in a way a muscle pain version of a sneeze. When it’s over, it is such a relief. So strange.

None of those are complaints. I know every medication has effects. Everything has a cost, or price to pay. If this medication is life saving, or gives some reprieve, it is worth that cost and I will pay it with gratitude. This is a description of my experience, not a litany of suffering.

So that’s it for now. Scan is in January. I’ll be sure to load up on fluids first, to protect my kidney function as best I can.

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Daniel, this is the first time I have read you discuss your profession. I have deliberately not written anything to indicate that you are a doctor because I am not sure you want to reveal that part of your life.
I very much appreciate you sharing your experience, especially since it reveals to me and to those who care about you what challenges you face. In no way is it interpreted as a complaint. You report your experience. Others who confront similar challenges have a valuable resource in your story. Even though each person has a different experience, it helps to share and compare.

I agree that fatigue isn’t painful, and it is difficult. I wish you could use your fatigue as a signal to rest. If the medical team with whom you work don’t honor your condition, then an intervention may be necessary. I know administration isn’t as helpful as they could be. Being so gentle, you may find it harder to confront and make plans for more rest time.

Your NP sounds like a jewel. It seems your oncologist missed his courses in bedside manners

Thankfully, you have an appointment with an ophthalmologist. Perhaps you will find better differential diagnosis and treatment.

My dear friend, Ed, here in Spokane has testicular cancer and has been under care for several years. He finally had to reluctantly resort to Pampers. Now, he is so happy with them, he brags about how helpful they are. He, too, has fatigue; He will probably be on very expensive Rx for the rest of his life. Thankfully, his insurance covers it. He has radiation from the same radiologist as I, and we think the world of him, Dr. Fairbanks, at Cancer Care Northwest.

What type of doctor specializes in muscle cramps? Or, perhaps a nutritionist? I have no idea but do hope you can find relief.

When I started cancer chemicals, I was given instructions by my medical oncologist and hematologist to use Glutamine, a muscle performance cell volumizer. I stopped for a while and my leg cramps returned. She instructed me to resume using Glutamine.

My thoughts are with you and Ning as you confront your challenges. Please do share your experiences.